One of the most important aspects of cancer treatment is self-care. As with any chronic condition that requires ongoing medical attention, cancer patients need to take charge of certain aspects of their own lives in order to optimize their success and live the healthiest way possible. Fortunately, there are many tools out there that can help, especially in this age of the ubiquitous mobile device.
Since my own diagnosis of Stage IV lung cancer back in November of 2014, I have made it my mission to share my story and hopefully help other patients along the way. I’ve clearly had my own ups and downs, and in the ensuing years, I have managed to learn a thing or two about the process of treatment. Being a vocal advocate on multiple forums, I have been fortunate enough to connect with a wide variety of patients and caregivers, as well as various medical professionals and individuals in related support industries. Sometimes I reach out to them, sometimes they reach out to me. Continue reading Upcoming: Self-Care Challenges→
Because I am sometimes spread more thinly than others across the social media spectrum, I need to add in one of these aggregate posts to link over to articles you might have missed because they were not posted here on my blog. In order to maximize my ability to target other patients and caregivers, I have published quite a lot on LungCancer.net while reserving the space here on my blog for more personal or passionate material.
While I hope that my readers are keeping up with the wider range of my work and social comments either by following my author page on Facebook or reading my Twitter feed, it is still easy to miss new material in these over-saturated times.
So, without further ado, here are links to some of my recent material you might have missed. Don’t forget to option-click so that these links open in a new tab, making it easier to come back to this page for more clickety-clicking fun! Continue reading Recent Posts and Updates→
Well, it’s time for another needle. I’d been successfully avoiding a lot of these for the past six-ish months, but the afatinib pill I had been taking simply wasn’t working the way we needed it to. (Which is to say, it did not stop the cancer from spreading, much less reduce its presence.) So, on this uncharacteristically rainy Southern California day, I commuted through a maze of side streets to avoid morning rush hour traffic on my way downtown to the university hospital where I am to receive today’s infusion. It’s a far cry from the cozy satellite clinic I had been accustomed to up in Pasadena. I’ve spent the better part of 90 minutes waiting for things to be prepared since I checked in; I’ve wandered the maze of the hospital, searching out a paltry offering of snacks in the lower-level cafeteria and the free coffee in the main waiting room, sitting in various rooms and surfing the free Wi-Fi (but unable to stream Flint Town on Netflix, much to my chagrin).
Here, in the Day Hospital, as it is called, the vibe is wholly different than the spa-like atmosphere of my old chemo haunt. While this is certainly clean and bright, it feels like a hospital. There is nothing aesthetically pleasing about the large room cordoned off by sliding curtains. A few windows along one wall allow a tiny amount of natural light in, but they may be closed off by curtains at any time. Yet the reception staff seems bright and friendly.
The drug I am getting today — ado-trastuzumab emtansine, or Kadcyla — is not a traditional chemotherapy, and there have been some weird holdups in getting it properly scheduled. In part, this is because my use will be slightly off-label. My insurance company refused to approve it — but they also would not deny it, leaving me in a strange limbo where other plans were difficult to make. The hospital pharmacy has been working with the drug manufacturer to cover the costs in case insurance ultimately denied coverage, and we are moving forward with the understanding that, somehow, the medication will get paid for. These concoctions are so expensive that it is unreasonable to expect that patients could actually afford to pay out of pocket, but somehow the system works to cover these costs most of the time. The trick is figuring out how. I am three weeks delayed getting in for this new treatment, which hopefully will be drastically more effective than the pill I had been taking. At least the bar there isn’t very high.
We all know — or we should all know — that lung cancer is one of the biggest killers in our society. With an estimated average of 433 people dying every day from some form of this disease, there is no question as to why it is considered such a horrifying diagnosis. Lung cancer kills more than any other cancer, and more than its three closest competitors in the cancer arena combined. If there were cancer cage matches, lung cancer would win virtually every time based on the sheer volume of its devastation and mayhem. Yet, in spite of receiving only a fraction of the research funding that other cancers get, a surprising number of treatments have emerged to help lung cancer patients outlive their initial prognosis.
But you have lung cancer! You’re expected to die. And, by the way, you’re expected to die quickly (and brutally). That is what the common narrative tells us.
Lung cancer treatment has made amazing bounds over the past decade. For a growing number of patients, living with Stage IV lung cancer is no longer an immediate death sentence, if a death sentence at all. For some of them, especially those diagnosed “earlier” in the Stage IV spectrum, while there are still a few months to alternate between treatments to find what works, or for those lucky enough to have an actionable mutation, even this advanced type of lung cancer can be treated as a chronic illness instead of a fatal one. Earlier and better diagnoses have led to younger and healthier patients having a chance to engage in this challenge before their cancer has beaten them down from within, and they have brought a new level of perseverance to the process. Continue reading The Overstayed Welcome→
It all started with a pain in my back. I was a mess. Every day, the pain grew and spread until it ran down my entire left leg and shot up into my chest. What I had hoped might be a simple pinched nerve turned out to be the result of a new metastasis in the muscle of my lower back, conveniently pressing gently up against the sciatic nerve like a feather made of barbed wire attached to a cattle prod.
To treat this nasty beast, the only practical solution was to zap it with radiation — something that I could barely wait to begin doing. By the time this was presented as an option, I was in such agony that surgery would have been appealing. Radiation, by comparison to virtually anything else, sounded like a relief. Continue reading Radiation and Me, A Love Story→
The idea of creating or participating in events that raise awareness about lung cancer is very close to my heart. My mother started the Breathe Free Walk to support lung cancer research, and I was in South Carolina for its inaugural event in 2016. The turnout was amazing considering the lack of resources or experience in putting it together, and the 2017 walk was an even more successful fundraiser.
Part of raising awareness is giving voice to other patients and listening to other points of view. There are many types of lung cancer, and the patient experience can be wildly different. It is important to understand that many of our preconceived notions about these cancers paint a picture that often does not reflect the reality of these experiences.
One thing I have found very enlightening is in my exposure to patients with mesothelioma. This variety of lung cancer has long been associated with older patients who worked around asbestos, a material that has long been known to cause cancer. So discovering patients who contract this disease under the age of 50 conflicts with expectation. And yet, it is much more common than I had ever imagined.
Below is a guest post, contributed by a mesothelioma patient who shares my view about the importance of group events designed for both fundraising and awareness.
Charity Runs Help Raise Money, Awareness for Cancer
Charity runs and walks serve several purposes: they raise awareness and money for non-profit causes, bring communities together, and also promote fitness and wellness in those communities. From the smallest neighborhood runs to national organizations, charity runs for cancer are important for bringing awareness and raising funds for research and patient care. This is especially important for rare cancers, like mesothelioma, that get less attention and less funding. Here are some of the bigger runs, and a small run that is just as important.
A Cancer Awareness Fundraising Run, Photo: Virgil Anderson
The STOP CANCER Run/Walk
STOP CANCER is an important charity group because it focuses on raising money to help fund young researchers, those that are the most promising and who are working on innovative new treatments and preventions for all types of cancer. The annual run and walk takes place in October and raises hundreds of thousands of dollars every year and attract over 1,000 runners and walkers. It takes place in Van Nuys, California, with participants coming from all over the country to run, walk, and donate.
Relay for Life
One of the biggest cancer events in the country is the American Cancer Society’s Relay for Life. It is a nationwide team event with the purpose of raising funds for cancer research, patient care, and cancer education and prevention. What makes this event different from other fun runs and walks is that, depending on the particular event it lasts between 6 and 24 hours. Each team participating has someone on the course at all times, as a symbol that cancer never stops or sleeps. Thousands of events are coordinated for Relay for Life in communities across the U.S. and in other countries.
Race for the Cure
Another of the biggest cancer charity runs in the country is the Susan G. Komen Race for the Cure. Like the Relay for Life, this is a nationwide event with individual races occurring in many communities. And unlike that event it is an example of a charity run organized for a specific type of cancer. The Race for the Cure raises money for research, screening, treatments, and education for breast cancer. The races have contributed $2 billion to these efforts over the years.
Miles for Meso
Another important, but smaller running event is Miles for Meso, which highlights the rare asbestos-related cancer known as mesothelioma. It is organized by the Simmons Mesothelioma Foundation and is a 5K run or walk that raises money but also crucially raises awareness, a constant issue for rare diseases. The race began in Illinois but now is held in several locations in multiple states every year in the month of September. Money raised goes to the Mesothelioma Applied Research Foundation, which has eradicating mesothelioma as its main goal.
Fun runs and walks are not the most efficient way to raise money for a worthy cause, but there are many important reasons they are valuable. Building awareness is one of the most crucial of these reasons, especially for diseases that are not so common. They are also important for community building and getting people involved beyond simply writing a check to make a donation. And finally, these events are positive experiences for everyone, bringing people together for a good cause and to get people active and socializing. These events are to help cancer patients, but they are so much more than that.
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I have a predilection for skepticism, especially with regard to hyperbolic medical claims about cancer treatment. Since my diagnosis, I have received many suggestions for things to try and I have been pointed to countless articles about amazing new treatments (and plenty of old ones). Each time, there is a flutter of hope, and I want very badly to see or hear a new piece of information that is going to change the cancer treatment paradigm forever. I think that most patients and caregivers feel that way. Yet, the vast majority of information on “new” or “revolutionary” treatments being passed around via the Internet seems to fall somewhere between misrepresentation and outright fabrication.
Over the past months, I have written a number of short articles on this subject for LungCancer.net — here are links to a few of them:
As longtime readers know, I try to encourage critical thinking and hope to present a good example of that approach to information on cancer treatment options. If you haven’t already, I encourage you to read and share my series of Wellness Warrior posts. (You can type the phrase in the search box for easy access.)
It takes a concerted effort, sometimes, to cut through the quagmire of nonsense out there. But if we all make that effort, together, to read beyond headlines before reacting and to vet our sources before we share, it will help to reshape the whole narrative around cancer as we know it.
If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many otherfancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)
As a “Lung Cancer Advocate,” writing for multiple sites is a way to reach and presumably help more people. That is why I sometimes take a break from my blog and contribute to discussion sites like Quora or write for communities like LungCancer.net. I participate on sites like Patients Like Me, Health Unlocked, and Cancer Support Community. I also publish my audio and video blog, The Deep Breath, for subscribers on Patreon (there is a link for the RSS feed for the audio-only episodes). All in, it sometimes seems like I am spread a little thin.
But it is important to reach out in many ways, especially, it seems, when Lung Cancer Awareness Month still seems neglected in the wake of the Breast Cancer Awareness Month juggernaut that is Pink Ribbons and merchandising and organized events at every turn. Not to mention that there are more causes seeking awareness than there are months, and the limited color options for ribbons are often appropriated for multiple causes (sometimes even simultaneously). Continue reading Advocacy, Messaging, and Outreach→
Obviously, a certain theme has been on my mind recently. It is one, no doubt, that I will continue to explore.
If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many otherfancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)
Dropping a bomb or sabotage — what does it feel like when you get the news of someone’s cancer second hand or by accident? That is what I have been pondering this afternoon since offhandedly mentioning my blog address in conversation earlier, without pausing to put its content in context. Since I don’t look like I am sick, a non-subtle reveal that I have lung cancer can be like a slap across the face. It’s a shock. One I deliver, I expect, far more often than I intend to.
I’ve been told on more than one occasion that it should not be my problem, that I should not feel obligated to hold somebody’s hand when I tell them about my “health condition,” and that I cannot be responsible for another person’s reaction to my disease. But I also consider the reality that most people know someone, quite often family or a close friend, who has struggled with a form of cancer. Depending on where you get your statistics the numbers vary slightly, but no matter which source you use the bottom line is that over a third of us develop some form of cancer. That means out of every ten people you know, three or four of them are likely to have cancer at some point in their life. It is no surprise, therefore, that on my street alone I know of seven patients — and I should stress that those are only the ones I know of within less than two blocks, not necessarily the absolute total for the street. Also, I’m not particularly social or friendly, in case that is relevant to knowing what neighbors are up to. In other words, there are probably more of us on this stretch already. Continue reading Dropping the Cancer Bomb→
I’ve been told on more than one occasion that it should not be my problem, that I should not feel obligated to hold somebody’s hand when I tell them about my “health condition,” and that I cannot be responsible for another person’s reaction to my disease. But I also consider the reality that most people know someone, quite often family or a close friend, who has struggled with a form of cancer. Depending on where you